I was diagnosed last year with scleroderma, mainly linear and morphea. Now under Royal Free. Have tried tacrolemus cream which was unsuccessful. Rheumatologist wanted me to start methotrexate which I wasn’t too sure of as had relative on this with lot of side effects. Then was offered steroid infusion which I have had this week and to start mycophenalate as maintenance but low dose only. Told by Rheumatology nurse side effects were the basic. When I got prescription this week was surprised to see within 4 weeks dose would be 2000mg which seems to be high, and then read some of possible side effects. Have had no talk through of this at all and bit unsure just to start.
Have thought before trying this drug I might investigate holistic nutrition approach and diet to control this maybe for now! wondered if anyone has tried and if it did help. Thanks for any advice.
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Sus22
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No one can advise you much on the side effects of methotrexate or others because each person reacts differently - same with “holistic” approach.
I have tried all these drugs and holistic approach, in turn and simultaneously. After 12 years under rheumatology and others with varying diagnoses, I’ve found the best way is to opt for the medications and a holistic approach in terms of lifestyle and wellbeing. But I have still evolved systemic sclerosis with Sjogren’s and hypothyroidism, especially during the two years I was off all immunosuppression when my GI and skin issues escalated.
So for me taking treatments while also living as healthy a life as I can manage, is as good as it gets I’m certain. And it’s far from ideal - but much better than it was when I was trying to manage by holistic methods only. My medications are polypharmacy now including prescribed nutritional suppliments - but the immunesuppressant I’m on - which has helped me most systemically with no side effects - is Mycophenolate.
Thankyou for your reply, I found this quite interesting and helpful, it’s just nice to get other people’s experience but obviously I know everyone has such varying symptoms. I shall have a good chat with my rheumatologist and take it from there.
This recent paper describes EULAR recommendations of non pharmacological approaches for doctors to adopt in parallel to drug treatment. (Seems common sense, we all try so much of this, but good to read that holistic approach is being advised)
That's a really good paper, thank you for posting, and covers most of that SRUK recommends, good to see it summarised and as you say, most of it is common sense. It says every little about nutrition though!
It can also be useful tool for requesting help in certain areas if we are not being properly signposted. When I was diagnosed, my rheumatologist said to her nurse - 'do we have any leaflets? No, oh, that's a pity!'
Good thing I had already found SRUK (which led me to my own diagnosis, fortunately my GP agreed with me and referred me to a consultant) and I regularly review the scientific literature that is not behind a paywall.
Obviously we should all be following a sensible balanced diet and should be checked for the common problem areas especially if showing symptoms of deficiency (eg Vitamin D and iron), but for most of us, at least trying the recommended medication is sensible.
In my case, I work out of doors in a filthy environment and I have found that taking mycophenolate (3 gm/day over 7 years now) has increased my incidence of minor skin/flesh infections (from little scratches, cuts, thorns etc) due to the reduced white blood cells. It's my responsibility to be self aware, try and wear gloves as much as possible (important for Raynauds too), seek help when I have an infection, insist on early and strong antibiotics (my GP drilled this into me) . Also to be careful about sun protection due to the increased risk of melanomas from the mycophenolate. As we all keep repeating, we have to be our own advocates with this disease.
But given the long term risk of worsening scleroderma, for me, taking the mycophenolate is by far the better option than not.
I was diagnosed with limited cutaneous systemic scleroderma 30 years ago and always adopted an holistic approach ... I do believe it had helped me and whilst I am now taking some medicines I do believe it has delayed my need for tablets ... I am much more aware of what foods to avoid (wheat, dairy) or I can eat in moderation, I avoid the cold my house is kept at 23 degrees C constantly ... this has made an enormous difference and no drafts I have triple glazing, I do reduce the temperature in my bedroom but have a mega thick duvet, there are many things I do automatically now which I believe overall reduce the stress on my body .... I wanted to avoid medicines as long as possible because I feared that I would need bigger and bigger doses to get any affect. Stress is a major factor for me so I avoid it like the plague. I think everyone is different but you do what is right for you ... it has taken me years to work out what works for me but I really believe it has been worth it .... my single biggest problem is that at GP level they all behave like they think they're experts and actually make me more ill .... whenever I am under the care of the real experts I am fine ... I am under the Royal Free and they have been brilliant ... they really work with me, actually listen to me in making things better ..... I am terrified of having to see a GP as whenever I do I always end up more ill. Good luck in whatever you decide but my best advice is Listen to your body ... if you find medicines that make you feel better take them but if they make you feel worse don't, alongside this try holistic methods ... you have nothing to loose.
Thankyou for replying, what you have written is so helpful and quite encouraging. It is all a bit of a minefield really, but I’m hoping I can have a good talk with my rheumatologist and put my feelings about taking the drugs at the moment to her and see what she says. I have already been in touch with a nutritionist who surprisingly has actually heard of scleroderma so hopefully I can work with both.
At the moment there is only one doctor at the surgery I trust. The others, everything seems above their heads.
Only on the day of the week, this doctor is duty doctor is it worth contacting the surgery. The others doctors can just make the situation worse. Prescribing wrong drugs, not understanding blood results etc etc not a clue...
111 sometimes openly say they can't help..as they are not an expert on connective tissue disease. Everything is dire...
I'm so sorry to hear this .... I won't tell you my full story about GPs because I'm in the midst of legal action. Cover your back as much as possible.... I have screen shots of my medical notes that miraculously a month later have been changed, comments deleted and rewritten .... all I can suggest is keep trying to find a GP you trust .... change surgeries., change doctors, I now have a consultant who gets exactly what is going on and had given me 'an open appointment' so I don't have to go via my GP but can go direct to him for next 3 years ... we had a laugh as I suggested I'll contact him in next 3 years just so he can give me another open appt! It is absolutely critical you find someone you trust .... I know how hard this can feel I've been there, at times it felt like they were trying to make my situation worse just to prove a point, now 5 years on I have proved the point but I'll find it hard ever to trust a GP ever again but at least I have the truth about my diagnosis ... that's all I wanted.
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